Monday, March 21, 2011

Man and Woman of the Year Kick Off

A quick report on Ally. She finished up her swimming season about a month ago. And I don't think I realized quite how good it was for her. All of the chemo that she gets...well it settles in her joints and it is painful. Her ankles get very tensed up and she can't do simple things that she wants to do like play basketball with her brother or ride her bike. Lately, she has been struggling with the joint pain again. And the neuropathy in her feet. I felt so bad for her when she told me that she "wanted" to ride her bike, but it just hurt too bad. Every night Jerad will wrap both her ankles with ace bandages. I am not really sure what it does, but maybe provide some mental boost for her. It is just a bit shocking to me, because we haven't seen this joint pain since early last fall...right about the time she had started swimming. I think the swimming just kept everything flowing for her. Dr French even talked to us about the steroids never really leaving her system. He said you have to exercise to get the steroids out of the fat stores of her body. And now that she is not exercising as much, I definitely see the steroids are harder on her. They are building up. Well I just wanted to note that out here...for all those battling the disease, I like to share my little bits of knowledge.

Secondly, I am pleased to say that LLS has chosen Ally to be their "honored hero" for the Man/Woman of the Year campaign that kicks off this week. All of those candidates will be raising money with her in mind and her story/face will be used in the media pieces you will see in regards to the campaign. So tomorrow, I have to go speak to the candidates and tell our story....some of them don't even know what having leukemia is like. It is our job to try to tell them...inspire them. Which meant I had to try to collapse our whole last 22 months into a short speech for the kick-off event tomorrow night. It was a bit hard, because as most will know, I could (and have) written a book on the subject. Anyway, since I typed it all out for my own purposes..I thought I would share it here. No new information, but even as I wrote it I think I have almost forgotten how bad it was and how far we have come. And it caused me to yet again count my blessings and thank Ally's Army. Here it is...written as though it will be spoken and not with perfect grammar, etc. Hopefully I can deliver it with strength and not sorrow.

Our daughter Ally was diagnosed with ALL leukemia, high risk, in May of 2009. She was 7 years old. A lot of people ask how we knew that Ally was sick. To be honest, our lives were a bit of a blur at that time. Just two months prior, I had lost my mother to metastatic bladder cancer at the age of 60. We were reeling from that loss when Ally decided that she didn’t want to go to school anymore. Likewise, she would run off of the soccer field crying. We dismissed it as grief for the loss of her Grandma and kept pushing her on. We went on a family vacation to try to “heal” from 15 months of battling cancer with my Mom. Ally sat in a chair by the side of the pool while her brother and sister played. We knew something was wrong and had even made an appointment to see the doctor. We were patiently waiting for our drs appointment time to come up. And I was honestly thinking that she had mono.
One day Ally could no longer get home from the bus stop, I called the dr and demanded to be seen that day. We were sent to Dayton Children’s for bloodwork and told to stay and wait for the results. Within an hour, we knew our first born daughter had leukemia Her hemoglobin was at 4 (usually 12) A bone marrow test the next day would confirm what kind. The day is a blur….much of the next year would be a blur. I remember my husband using his phone to google survivability rates of childhood leukemia.
Our nightmare was confirmed the next day when Dr Broxson did a bone marrow aspiration on Ally. She had Acute Lymphocytic Leukemia. We knew enough at that point to know that this is the “good leukemia” It had a higher cure rates than others. However over the course of the first month, we found out that Ally’s leukemia was high risk. A further test showed she would have to do a year of intense chemotherapy (instead of the typical 6 months). She would also have to undergo cranial radiation. 8 doses of radiation right to her brain. Leukemia likes to hide in the spinal fluid and around the brain and we had to do what we could to prevent a reoccurrence.
The chemotherapy was awful. It hit her hard. After being in the hospital for a week….having several blood transfusions and chemo…she was sent home. It was so scary to bring her home. She literally laid on the floor or the couch not moving. Her jaw hurt so bad (a side effect) she would not eat or even drink. After a few days of this, we heard her go down in the bathroom one morning. She had passed out from dehydration. My husband scooped her up, threw her in the car, and was at Dayton Children’s in 14 minutes.
Her chemotherapy continued for one whole year. Every week. Sometimes more. We lived at the hospital…spending something like 60 nights there. Including birthdays, anniversaries, and even Christmas. Most of her time spent there, was due to the side effects of the intense drugs they were giving her to save her life. She got fevers. She got mouth sores so bad she would go on a morphine pump for a week at a time. She couldn’t even talk to us because it hurt so bad. She got pancreatitis. She was in a wheelchair at times because her joints hurt so bad she couldn’t walk. We dealt with vomiting, constipation, and lack of sleep for most of the year. We were forced to be inside our house, not allowed to go to restaurants, shops, parties, etc due to her immune-compromised position. We relied on friends and family to help us with our other two kids… our son Evan, now 6 and our baby girl Carly, who is now 3.
Ally is actually still undergoing chemotherapy. She takes a little bit at home every day and still goes to the hospital one day a month. She is still tested all of the time. Her treatment should be over in fall of 2011 after 28 months of treatment. She will be followed for years after that…to determine the effects of all of the treatment on her body.
The fact of the matter is that we made it through. Within a week of her diagnosis, we had formed an Army. Ally’s Army. This Army carried us through our darkest days…running our errands, making food, taking care of our kids. We heard about the LLS Light the Night Walk. We wanted to have all of our Army walk behind Ally on a fall night that year. To show her our support. That night, we had and incredible showing of 400 people that walked behind her. And we amazingly raised $40,000 for LLS. What got us through the tough situation was trying to make something good come from something so bad. It was healing.
Similarly, my Dad wanted to do something in Ally’s honor. He was not a scientist nor a doctor, so he knew he could not do anything in that regard. But one thing he knew was that he was good at raising money. He signed up for the Man of the Year competition and surpassed everyone’s expectations. With a team of Ally’s Army to back him, he raised more money than anyone in the history of the program. He raised over $430,000 with the help of over 500 donors and sponsors. He became the National Man of the Year, from little old Beavercreek Ohio. His face, along with that of Ally, is now on the front of the LLS media and the National webpage.
So this year, when Lisa asked if Ally would like to be the Honored Hero for this LLS campaign I was honored. I was touched. I jumped at the chance to help again. Because Ally is such an inspiration to so many. Her strength and her positive attitude in tough times….well she is one tough little girl. And if she has already inspired so many, I hope that she can also inspire you. To help raise the funds to further the research to try to put an end to this disease. For all the survivors and for all of those currently battling the disease and for those who have yet to be diagnosed. The time to do something is now. And for all of those people out there…. I thank you in advance for all you will do.


  1. You'll be great, Janel. I do hope you can realize how much you all have beaten, and deliver this with victory and hope in your voice. I know it's not over, and that's part of your message, that's why you and so many others are still fighting. And winning.

  2. Janel, your speech is well written and I know you'll do fine presenting it. It definitely hit close to home for us. We're so proud of Ally for all she's endured and know she's a positive role model for all, a fantastic choice to be the "Honored Hero" for the Man/Woman of the Year LLS campaign.

  3. This is wonderful Janel. I think you nailed it. I hope everything went well today!!!!

  4. Janel, that is fantastic. It was straight from the heart and said many powerful things, you guys have done such incredible job and your entire family is an inspiration to many people. I am so proud of all of you. Good thoughts and prayers continue to come your way---Ally's Army is winning.

  5. Reading it brings me to tears - of sadness for what you all have gone through and of joy for how you all have tackled it and conquered it with strength and grace. I know she is not done until the Fall, but rest assured she has conquered this! Tears of Joy!!!

  6. You are such an inspiration my dear is no surprise that Ally has come to be one as well.